Choices

Evening ladies!

Before I forget, I will be in Cleveland tomorrow having the thumb surgery checked. I may be able to get back on when I come back as long as I'm not too tired. My rheumatologist is going to send in some prednisone to help stop this flare that seems to be going on and on. I will actually see him next Tuesday and can fill him in on everything that's happened to me. He just gets a little bits and pieces for now so this will give me time to explain it all.

Marla how does your house look painted? There's nothing like a freshly painted house to brighten up the area. I'm sorry your brother and sister-in-law are so trying at times. It's probably pretty rough on you especially when you're tired or recovering from chemo. Guess that would be a good time to set a boundary LOL. Tell them that I said that they can come over as long as they promise not to talk about anything health related haha. Not that I have any say in the matter of course. :-)

Claoh I hope you're having fun tonight! Sounds like there are a lot of things for you to do where you live. I had to laugh when you said cornhole. :-) Seems like that's a popular game everywhere. You must have had a lot of fun on those jet skis. But I can see your point about not keeping a boat out on the lake with all the bird poop. Yuck!

Okay just a short one tonight. Just wanted to let you know that my long-winded dissertations will not be there tomorrow morning. :-) You ladies have a blessed day tomorrow also. Y'all deserve it!!

Pat

Hi ladies!

Wasn't really going to write anything today but I needed to jump on to remove the statement that immunotherapies don't work on TNBC. That was an incorrect statement. It's hormonal therapies that don't work on TNBC. I really need to watch myself when I make statements like that and I apologize to anybody that's read that and believes that to be true.

Marla, I found out specific information that applies to you about the vaccine for TNBC. Although I do not qualify as mine has metastasized it might be worth it for you to look into. Here's a snippet of that conversation I had with the Cleveland Clinic:

"... I understand that you are also reaching out about the trial to provide your friends with triple negative breast cancer more information. I always refer patients to the National Cancer Institute's public website at clinicaltrials.gov for more information on specific trials. These web pages include information such as a detailed description of the trial, recruiting status, and eligibility criteria. 

You can search for the study directly on the website.

The clinicaltrials.gov ID for this particular study is: NCT04674306

The full title of the study is "Adjuvant Therapy With an Alpha-lactalbumin Vaccine in Triple-Negative Breast Cancer"

This website will provide you with all the information that is publicly available about the study.

There is one more thing to note. At this time, we have completed our initial cohort for enrollment onto the triple negative arm of patients not currently receiving Keytruda (pembrolizumab). However, as we continue to review study data, new enrollment slots may become available.

This trial is only available at Cleveland Clinic Main Campus. If your friends believe they may be eligible for enrollment and are not currently patients at Cleveland Clinic, I would encourage them to reach out to our Cancer Answer Line at (216) 444-7923 to become established with a Cleveland Clinic Breast Medical Oncologist. "

Marla, I know you live in California but there are a lot of options if you choose to follow this course. The best thing you can do is get a hold of them to see what is available to someone living on the West Coast. They have helped my husband and I tremendously through foundations and grants and may be able to help you also.

So ladies, this will be a little short today. I am having a difficult time coming to grips with having another door slammed in my face AKA the vaccinations and really need some time to come to grips with it all and then to keep looking. Y'all be blessed and have a great day.

Good morning ladies! This is a photo of the front of my house. I thought I would share it with you since this has been a busy week. Well, we all weathered the Tropical storm without incidence. I live close to the mountain range, but far enough away not to be in the way of mud. The property lies on a mild slope and there are 3 houses on the lot. My house is at the end of the driveway. I own the middle house too, that is where I had my patient move into since he is 76, today is his birthday, and he needs some help. I have looked after him since 2014 when his mother died. He is a bachelor and has had a heart attack, kidney stones, prostate cancer, and had fallen a few times. He decided to sell his family home for a cool 2 million CASH. He decided since the house would be available for rental when my brother left, he would like to move it. No family left to look after him, so my husband and I sort of adopted him.

I have lost all of my hair, no hair left under my arms, and waiting for the rest to fall out. Always a surprise in the shower! I am so glad to hear from you ladies, always a bright spot in my day. I have bits of nausea now and then esp if my stomach is empty. My manicurist gave me two wigs, one auburn and a light auburn with highlights, I like these, they almost look like the way I wore my hair before. My sons both said, "Looks good, looks just like you!"Today I am very tired. Don't know why, just am. I have been up and dressed since 6 am, and it is now 8:30 am and I am ready to go take a nap. The drs. office just called to confirm my chemo appt, (like I would forget) lolol. This is the wig I got from my manicurist yesterday. Looks like me!!

Thank you for the compliment on my house painting. I had professional painters do the work. My brother and I painted it 10 years ago and that was enough for me! Took a 2 hours nap and some food, feel much better now. That fatigue hit me hard, out of the blue.

Claoh, how are you feeling? let us know how you are doing. I admire your bravery!

Any word from Sadiej yet?

Good morning ladies!

Marla you never cease to amaze me! I can tell you have a big heart the way you take care of your neighbor. Put a smile on my face when I read about it. And your house is gorgeous! I really do like that paint color on it. It's like it was always supposed to be painted that. Love your hair too! That color looks really good on you, although as you mentioned that's the way it looked before. Like I was telling you earlier, the good news is that you don't have to shave anymore LOL. Always got to look on the bright side right?

Claoh I think you're a lot more ambitious than I would be. Typing up the list of questions? Geez I think I would just take my scribble sheet in haha. I can't wait to hear what happened at your palliative care doctor today. I'm a little nervous for you, with that getting into your lymph nodes and possibly your sternum. I'm concerned that it might metastasize into your lungs or lymphatic system. Like you said there are areas where TNBC can metastasize to aka the lungs, the brain, the bones. I had something going on with my sternum but they weren't concerned with it at this point in time. I just pray that I don't metastasize to my bones. I hear it's very painful. My rheumatologist set me up to get tested for bone density yesterday. I'm wondering if that might be a factor in everything else that's going on with me. I never thought to ask him LOL.

I'm glad you gals are still writing on the boards. Even if I don't feel up to it I try to catch sneak peeks of it when I'm not at my best. I never heard of a sleep bra before. Is that what they're really called? I always use a sport bra both during the day and at night. It seems to help me anyways. Had to get one a couple sizes bigger to fit my swollen breast into.

So I decided to take a different tactic on my chemo to see what would happen. As you know Monday was my chemo day so I spent most of my time in chemo munching on snacks that they had there for free to try to keep something in my belly. Not the most nutritious thing to do but I think it helped to continuously feed myself so I didn't get nausea so bad. The next day was the standard day of being very tired and nauseous along with diarrhea. Took my medicine required for the above and then decided after my rheumatologist appointment that I was going to stay out as long as I possibly could. My husband and I drove around the countryside and then he did something very special for me. We stopped at one of the many dude ranches so I could pet the horses. I choose one, or rather she chose me and I walked up to her and started petting her after the usual hand to nose introduction. I talked to her for about 15 minutes with her being totally attentive to me. So I sang her Renegade's song. Renegade was the name of my horse I had down on the dude ranch when I was a guide. He loved country music and when it was on the loud speakers he would "sing" along with it. It's kind of a guttural hum actually. So I sang Renegade's song to her while I was leaning over the post. She pushed her head into me while I was singing and then eventually put her head on the top of my back. I could feel the weight of her head as she just relaxed and listened. Sang that for about 5 minutes to her. Apparently she really liked it LOL. Got home late and managed to barely get something in my gut before I fell asleep. Like I said all in all a good day and I'm glad I fought through the fatigue.

Okay ladies here's my extra long blog for the day lol. Just a couple extra things to add: Marla did you find the blog count? If you have this one bookmarked you will see the count when you go to the bookmark underneath its title. Claoh, if you need to edit the blog go up to the top of yours and pick those three dots on the right. You can edit a blog up to a week old.

Be blessed and have a good day!

Hi ladies!

I am sorry I haven’t posted anything for a few days! I’ve been busy scheduling and going to appointments. I had an appointment with my actual oncologist yesterday. She is suggesting surgery asap, radiation and Xeloda for 6 months. She is going to present my case to the cancer board to see if there are more options for me. She is concerned because I did not tolerate chemo well at all and immunotherapy didn’t shrink my previous tumors. I am also getting a second opinion from a breast specialist. I see my surgeon this afternoon and have a brain mri and chest ct tomorrow morning🙏🏻🤞 Everything is happening so fast already and that is a good thing!! I hope everyone is doing well!! I’ll catch up on all your posts when I have a moment of downtime.

hugs to all💕

Karen